Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
My mom was tested several months ago for Lyme. She had a previous diagnosis of MS and has been sick for well over 30 years having been called FM for much of that time.
Here first test came back negative in a very big way. Nothing was even slightly positive. No antibodies to anything. The symptoms fit and she remembered a bull's eye rash long ago.
She has been on amoxicillan for about 3 months with herxing. Recently she was started on Flagyl and one other thing. She was tested again and this time came back fully CDC positive! Ultimately it doesn't really matter to most of us, but there are always those we know that still doubt. It is nice to know that the diagnosis is definitive now.
So if you were negative with your first test and still wonder if you are on the right track then a second test might be in order to set your mind at ease. I don't think your test could have been any more negative the first time around then my mom's. Now there is absolutely no question about it.
Posts: 1251 | From california | Registered: Apr 2005
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posted
Thank you for posting this. My 10yo daughter tested negative for everything except IgG 41, but she continues with classic Lyme symptoms. Igenex tests will be back in a few weeks, so we're waiting, but the pediatrician had almost convinced me to take her to a ped. rheumatologist. Really made me question my certainty about LD, but your post has encouraged me to persevere and not give in until we're really sure one way or another.
-------------------- Getting older is when we would rather not have a good time than have to get over it. - Oscar Wilde Posts: 386 | From Radnor, PA - where the ticks run free | Registered: May 2006
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bettyg
Unregistered
posted
jellybelly; hoorah! you're Mom will be counted!
Make sure the person diagnosing her turns it into your state's health dept. to be counted!
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posted
That's the trouble, one of them, with testing. Frequently the people who have been sick longest without treatment are no longer producing antibodies. So they test negative. Talk about catch 22. You can't get treatment from most docs without a positive test; but without the help of abx, the sickest people won't get a positive test! Heads you lose, tails they win.
Posts: 8430 | From Not available | Registered: Oct 2000
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Taking ABX to help encourage a positive test is really a neat little trick. My mom was actually on the ABX at the time of the test, some think you can not be on ABX for the test, not so apparently.
When I had my daughter tested about 10 months ago, I gave her about 2-3 weeks of my minocycline before the test. She quit the ABX about a week before, but also got a CDC positive result. She would have contracted the Lyme from me in utero or nursing and has been sick her whole life.
I have been on ABX on and off for about 3 1/2 years but it had been probably 6-7 months since I had taken ABX last. My result was IND, with 1 + on band 18, so the ABX do seem to make a real difference. Getting a better result if you take them just prior to the test.
One problem in my family though, my husband. He has all the symptoms, but even after a couple of weeks on minocycline, he was negative. He has been on a lot of ABX though for serious sinus infections and other things. Maybe the Lyme is wise to minocycline, I don't know....any thoughts? He doesn't seem to herx on the mino either.
Posts: 1251 | From california | Registered: Apr 2005
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